Around 75,000 transgender people who use gender-affirming hormones are using hormones their doctor didn't prescribe them, according to a new study.
CNN  — 

For the transgender people who seek it, gender-affirming hormone therapy can be lifesaving. But if they’re uninsured or their insurance won’t cover it, some bypass the health care system entirely to get the care they need.

Around 75,000 transgender Americans are likely using hormones that weren’t prescribed – close to 1 in 10 of the estimated 1.4 million transgender adults in the US – says a study published this month in the Annals of Family Medicine.

Beyond the health risks of using nonprescription hormones, the findings indicate extensive barriers to care transgender Americans face, lead author Dr. Daphna Stroumsa told CNN.

“Trans people face a multitude of cultural and structural hurdles in staying safe and healthy,” said Stroumsa, a clinical lecturer in the University of Michigan’s Department of Obstetrics and Gynecology who specializes in LGBTQ health care. “We need to streamline care. We don’t need to put barriers between patients and providers.”

Lack of insurance and denied claims lead people to seek unprescribed hormones

Using data from the US Transgender Survey, a sample of almost 28,000 trans Americans from the National Center for Transgender Equality, the study focused on two groups: Uninsured trans people and trans people whose insurance company denied their claims for gender-affirming hormones. Both groups were more likely to seek out nonprescription hormones than insured transgender people, according to the study.

Trans Americans are more likely to be uninsured than the general population – about 15.5% of respondents in the US Transgender Survey compared to 12.8% of US adults. And among uninsured respondents, around 21% said their insurance claims for gender-affirming care had been denied, according to the study.

About 84% of respondents to the US Transgender Survey said they wanted gender-affirming hormones, but around 55% of them were actually taking hormones. Among all respondents taking hormones, more than 9% of them said they were using nonprescribed hormones.

On one hand, the fact that some trans people circumvent the healthcare system to access gender-affirming care shows their “resilience,” Stroumsa said. But from a physician’s perspective, that’s a sign of failure, they said.

“This indicates that we have a problem in getting trans people lifesaving medication,” they said.

Hormone therapy can be expensive out of pocket – often around $30 a month, according to a 2013 CNN piece, though that amount can vary. It can also be dangerous when not regulated by a physician, Stroumsa said. Some hormone therapies can increase risk of heart problems or stroke. And without a doctor to monitor the dosage and components of the hormones they’re receiving, trans patients may experience unforeseen health issues.

Insurance is one of several hurdles to health care

Mounting evidence shows that accessing gender-affirming health care can be lifesaving for trans people who seek it. UCLA’s Williams Institute, a think tank that focuses on LGBTQ legal issues, reported that a lack of gender-affirming care likely contributed to high percentages of suicidal thoughts among transgender Americans.

And though it’s illegal for most insurance companies to discriminate against trans Americans, 30 states permit health insurance plans to exclude some trans health services, NPR reported in 2019.

Stroumsa said insurance companies that cover such procedures often ask patients to provide proof that procedures or treatments are necessary. For example, a trans man’s insurers may require him to provide two signed letters from mental health care providers when he seeks a gender-affirming hysterectomy, they said.

Insurance is just one hurdle trans people face in getting care. There’s the discrimination they often face from physicians and health care providers who refuse them care or misstate their gender, and higher rates of homelessness and joblessness – all likely reasons why some trans people bypass the health care system altogether.

“Health care systems and physicians and health care providers have so often failed trans people, either with direct discrimination or ignorance of trans people’s health care needs,” Stroumsa said. “We need to fix that.”

One of the ways physicians can start to mend those gaps, they said, is by including trans people in the agenda-setting process and taking their needs into account when setting insurance policies. Some major medical associations, including the American Academy of Family Physicians, have announced their support for insurance coverage of gender-affirming care. More voices in support of gender-affirming health care coverage could remove at least one obstacle.